person being held back by a band around their abdomen

Crohn's Disease Fatigue

I can feel it coming, a mile away. It starts slow, a nagging reminder in my back and up through my neck that I’m pushing too hard. That my body is fighting a battle I cannot see, and although I want very much to believe that I’m living a normal life in remission, any Crohn’s patient knows that’s just the very tip of the iceberg.

The ramifications of being 11+ years into disease activity means that even on the best days, there’s still an effect. There are still ways my body is different than it once was.

Life changes because of Crohn's

The pain, the trips to the bathroom, the daily medications, monthly infusions, routine doctors appointments, and blood work requirements - they are things I’ve stopped noticing, to be honest. They’re the only way I know how to live my life at this point, which works to my advantage most of the time.

Crohn’s disease fatigue is something I struggle immensely to explain to my friends and family.

To healthy individuals, fatigue means exhaustion, being overworked, maybe needing an extra day or a weekend to rest. Fatigue might mean spending some extra time beneath the blankets, curled up watching Netflix, and texting friends.

Fatigue for a patient like me

Fatigue means STOP moving right now, even though that’s often not even feasible. It means I can sleep on and off for 12 hours and feel not one bit better than when I went to bed.

It also means that the restless sleep that I do get feels miserable, requires coaxing to fall into and caffeine to withdraw from. It means my spine aches deep into the core of my body, like a silent alarm screaming “you can’t live this fast. You can’t ignore this.”

It means that I’m struggling, really struggling to function, and yet, trying to function anyway.

My struggles with Crohn's disease fatigue

For me, Crohn’s disease fatigue is almost as much of a monster as the actual inflammation, or the GI signs and symptoms often controlling my life. I struggle with fatigue the most, and I often wonder why.

I think there’s a combination of reasons - somewhat because fatigue is invisible, even to me, and it can feel extremely subjective to assess and share.

I think the lack of understanding about how Crohn’s disease leads to intense and long-lasting fatigue is not talked about enough, not with doctors or amongst patients and so I think it’s something I try hard to ignore, or work through, or blow past.

In reality, it sometimes feels crippling

It makes me feel desperately alone, too exhausted to try to explain to someone who can’t understand how I feel, and why, and what I need in order to “improve.” Sometimes improvement feels impossible.

The fatigue never really goes away, it just waxes and wanes - at times more tolerable and easier to bypass than others. It’s always in the back of my mind, and yet, when it becomes overwhelming I always feel caught off guard.

I feel like I let it slip by me, regardless of how hard I’d fought to keep going. Often, fatigue makes me feel like my own worst enemy, and honestly, this feels really hard sometimes.

If you struggle with the emotional and physical effects of Crohn’s disease fatigue, what has helped you cope? I’d love your suggestions. If it feels difficult for you, I wrote this so you know you’re not alone.

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